Dr. Jennifer Hulme thought her COVID-19 infection was just “average.” She recovered in a matter of days and went back to work.
Several weeks later she was incapacitated.
“I woke up completely disabled, profoundly ill (and) completely changed from my previous self,” the Toronto emergency room doctor said.
The avid runner was now bedbound. She had difficulties focusing – barely able to remember her address.
“I wasn’t able to parent my child. I couldn’t do very basic things with him, (having severe) sensitivity to sound and noise,” she said.
“You can imagine how that affects your relationships.”
She caught COVID-19 in April 2022 and is still suffering from long COVID.
A new paper warns the condition, which affects millions of people globally, presents a burden to patients, health-care providers, governments and economies that is “unfathomable.”
The report, called “The Immunology of long COVID” and published by the science journal Nature on July 11, draws on other peer-reviewed articles to state the disease is “multi-organ (and) multisystem,” that even infections without symptoms can cause organ damage, that there is evidence it causes micro blood clots and that SARS-CoV-2, the that which causes COVID-19, can remain in a person’s body.
And besides the perhaps best-known symptoms like fatigue and brain fog, long COVID also appears to increase the risk of stroke, heart attacks and diabetes types 1 and 2.
“(Long COVID) really is very complex and very heterogeneous and very challenging,” the paper’s lead author Danny Altmann told Global News.
And this virus, he said, “seems to do more and more … ghastly things.”
Altmann is a professor of immunology at Imperial College London in London, U.K.
What does long COVID look like?
Canada, the U.K. and the World Health Organization, along with many other countries, use different definitions for long COVID, though they all recognize it as COVID-19 symptoms continuing weeks or months after a person becomes infected with the SARS-CoV-2 virus.
And while different studies around the world have found different findings, the general consensus, the paper states, is that 10 per cent of everyone who gets infected suffers from long COVID.
That means 400 million people around the world need support, Altmann said.
“This has implications for our health-care planning, our health-care budget planning, our workforce planning, our employment law planning,” Altmann said.
“This is a disease of the entire planet and if anything, it’s a disease of socioeconomic deprivation rather than privilege because the socioeconomically deprived were most hit by COVID.”
The paper concludes by calling for more research and clinical trials – especially because researchers don’t know what factors lead to one person getting long COVID and not another or what symptoms will manifest.
University of Saskatchewan epidemiologist Nazeem Muhajarine said the oncoming burden comes as Canada’s health-care system is already at a “boiling point,” with staff burned out and leaving the profession — all while there is a backlog of patients.
He said Canada needs a long COVID patient registry to record what treatment options work best against what symptoms.
“We don’t have a real treatment (for long COVID),” he told Global News, saying that right now care amounts to addressing symptoms.
The information from a patient registry would go toward another very important aspect, he said.
“There are a lot of people (who have long COVID) who are not going to physicians because they have given up hope.”
Hulme said she believes she’s nearly recovered from long COVID — after seeking multiple kinds of treatments, including sessions in a hyperbaric chamber. And being able to walk again, she said, “feels like a miracle.”
But when her symptoms were severe, she told Global News she also suffered from a profound sense of loss because she couldn’t do the things she enjoyed or that give her a sense of purpose.
Drawing on her own search for answers and treatment, she said Canada needs to make health care, and specialist treatment, more accessible – ideally through virtual care.
She also said the country needs to get better at preventing people from getting sick and to increase support for people with disabilities, because long COVID could mean there will be many more in the future.
Facing a new diagnosis is intimidating, Hulme told Global News, adding that treatment and help need to be available.
“We really have to focus on what empowers people, on what to do when they do get sick,” she said.